Demelza began supporting Joshua’s family in 2013; at just a few months old Joshua was diagnosed with spinal muscular atrophy, and when combined with a serious respiratory infection it became clear that Joshua required palliative care. The family was referred to Demelza and came to stay at our Kent site, where they were able to make the most of their time together with Joshua in his last few days.
“The support from Demelza started immediately,” said Lee. “Vicky was able to access music therapy and Demelza's music therapist helped her put together a CD of songs and poems that were most important and meaningful from Joshua’s short life, which we still listen to sometimes. Then, within months of Joshua’s death, we were invited to attend our first bereavement event.”
For Vicky and Lee, this event was fraught with emotion. “It was very soon after Joshua’s death,” said Vicky, “and the first time we had been back to Demelza; it was a little overwhelming. At that time we were desperately seeking anyone who was in a similar position to us, someone else who had lost a baby or whose child had died from the same condition, and sadly we didn’t find anyone like us at that first event – that was very hard. However, what we took from that event was that, although the circumstances were different for everyone, we had all become members of this club that no one wants to be a part of; we had all lost a child. We found connection in that, and for the first time maybe felt a little less alone.”
Demelza’s bereavement events include activities that support families as they go through this process, including arts and crafts, music, and poetry, allowing them to engage in whatever way they feel most comfortable. “The creativity is endless,” said Vicky. “Each event has another touching, poignant, and creative way to remember the child we’ve lost.”
“We’ve found, as time has gone on and the rawness of that first visit has eased slightly, that these events serve as a chance for reflection,” continued Lee. “It’s very personal; as a couple, we’re marking Joshua’s life, and Demelza is creating the very peaceful space needed for that reflection to take place.”
The bereavement events at Demelza are also split for those families who have other children, and those who don’t. “When we were newly bereaved, Joshua was our only child,” said Vicky, “and I think it would have been really triggering then to attend an event where there were other children running around. The fact that Demelza has chosen to put that extra protection in place is so thoughtful, and important."
“On the flip side we’ve now been lucky enough to have another son – Alexander. We’ve always been open with him about the fact he has a brother, and why Joshua isn’t with us any more, so the fact he’s now welcome at these Demelza events helps us bring him with us on that journey. Of course there is sadness at these events, for Alexander and for us, but it’s also really thought-provoking, and at an age where he’s very inquisitive it helps Alexander feel more connected to Joshua as well. This is what life looks like for our family, and I think we’re all eternally grateful that all this time later Demelza has remained such an important part of that life.”